Sunday, April 18, 2010

How Can This Be?

I have asked myself the above question several times since October--when Anna started on the Humira (in my mind, a very powerful medication) and we saw very little improvement in her eyes. The inflammation in Anna's eyes settled down to a "trace" with the help of the steroid eye drops about two months ago, and that was a relief. But then, within the past month, Anna has been talking about some joint issues, telling me about some stiffness (more than she's used to). Now her knee has flared, with swelling and pain (enough to bring tears). She hasn't had knee swelling or pain since she was a baby. Again, in my mind, I'm thinking, "How can this be?" Not only is she on Humira, but also on Methotrexate. For now, we're adding ibuprofen twice daily. Her list of medications has grown significantly in the past six months--we've been adding medications, not tapering off or taking anything away. Her eyes have always been the main issue; her joints have been pretty well controlled (well, except for that jaw involvement last year).

Even though I like to post updates (I remember searching for real stories of kids with Juvenile Arthritis when Anna was first diagnosed--I know how much that means to many parents of newly diagnosed kids), I find that I often hesitate now to write about it, because I don't want anyone to think I'm whining or complaining about the issues we face. (Written words without facial expressions and vocal inflections can often be interpreted in a way we never intended.) In the past 10+ years of this JA journey, I've learned so much about myself and how I handle all of this, about life and the various trials we all face, about my faith and understanding of our Creator God who loves each of us (more than we'll ever understand) and doesn't cause anything evil, but who knows all (even before we do), sees all and hears us and guides us through, providing us with His strength, granting doctors and caregivers wisdom and knowledge and understanding (I do pray for that specifically!).

So another unwelcome bump in the road for us. Another reminder to myself that I have never wanted Juvenile Arthritis to define who Anna is or who we are as a family. I don't want it to become the main focus of our lives. We've done a much better job at that lately then I did in the early years, I must admit---it just took awhile to adjust and get my "sea legs," as I like to think of it. The waves (new developments) don't throw me off balance like they used to.

The one thing I've definitely learned through this and other family events over the years: It's really better not to know what the future might hold, but to take each day as it comes. So that's what we'll do again. More pills for Anna, but her knee is not nearly as painful these past two mornings as it was on Friday. Life goes on, and our Anchor (our faith in a loving, compassionate God) holds.


Amy Cunningham said...

Oh Tammy! I had such high hopes for the Humira/MTX combo for Anna. Do her docs have ANY idea why she isn't responding? This is normally the miracle drug combo isn't it?? I am so sorry she is in pain. Please keep us all posted on her progress. Hugs & prayers to you all.

Tammy Z said...

Amy, her doctor is surprised that this is happening with the levels of medication she is taking. I'll keep you posted (don't know why this hasn't exported to the Facebook notes yet. They used to export within a few hours of posting). It's easier to comment there, so I hope it shows up soon. Thanks for your hugs & prayers!

Amy J. said...

Thank you so much for posting about your daughter's experiences. I have a 4 year old son who was diagnosed with JRA when he was 18 months old. He has been struggling with uveitis for the last year and a half. I was so happy the first time I found your blog about six months felt like a huge validation of everything we go through with our son, and it was amazing to know we aren't the only ones... so thanks!

Tammy Z said...

You're very welcome. :o) Parents like you are the reason I keep us with this blog.